Life Issues

As a family, the future may suddenly appear altogether different to one you originally may have prepared for.  Some life issues which may arise, include:

Strain on Family Relationships– We urge you to seek professional help or genetic counselling if you feel the care of your affected child is jeopardising family relationships. 

Preserving the Dignity of the Child’s Self Esteem– Your child’s inability to communicate could be misconstrued as being intellectually lacking.  Whilst this may be true (and only long-term evaluations will indicate this) a child’s dignity should always be respected.  This applies to all those involved with the care of your child.  Be sensitive with regard to conversations about them if he/she is within hearing range.

Socialisation- If you have not been involved with children who have disabilities before the birth of your own disabled child, it may be helpful to join local parent support groups to meet other families in a similar situation.  This may help you adjust to a different lifestyle to that which you have been used to and will hopefully help your child to learn social skills and interact with other children.  Brothers and sisters of an AADC affected child can be of tremendous importance in the development of socialisation. 

School Issues– Speak to the therapists involved with your child about future prospects and expectations regarding education and plan a visit, if appropriate, to the playgroup or school, well in advance of a starting date.  Considerations should be given to:

• how will your child fit in?
• how will your child travel to and from playgroup/school?
• how far is playgroup/school?
• what medical facilities are available at the playgroup/school?
• what therapies are available at the playgroup/school?

Travel– Preparing to travel with your disabled child may be daunting.  Advance planning is advised.  Some items to consider when planning:

• ask about wheelchair/pushchair accessibility at the location you wish to visit
• check the emergency and hospital facilities at the location you wish to visit
• speak to the travel company for advice on travelling with a disabled child
• check the easiest mode of travel and their rules and regulations regarding weight, seating and wheelchair accessibility
• enquire about holiday insurance cover for your affected child and their main carer
• it is most important to ensure you are travelling with enough of your child’s medication to last the duration of your time away from home and include additional supply.  In some countries your child’s medication may not be licensed or available. (Suggestion: divide medication supplies into separate pieces of luggage in case a piece gets mislaid)

Emergency Plan– Ensure an emergency plan is in your child’s daily baggage.  This information should include your child’s personal details, contact addresses, next of kin, medication requirements, physicians details, any special instructions, disease information.  Remember this information should be regularly updated, as your child’s needs change.

Concerns for the Future – Talk to family members and friends educate them about AADC Deficiency.  Make them aware of your fears and concerns for the future of your child and, where possible, encourage registration to the The AADC Research Trust.  As your child grows, you may need to give consideration to house and car adaptations.  Discover all benefits and entitlements, which are due to your affected child.

Note:The above is not an exhausted list of information. You should always seek the advice of professionals and therapists in your area to see how these issues affect you and your child.